Pyloric Stenosis in its infant and adult forms has left many people with unexpected and unwanted complications and unanswered questions. Here is some of what two survivors have learnt, supported by the experiences and discoveries of our readers.

Category: Physical Health Hazards after Pyloric Stenosis

Having your new baby go through surgery, however “minor” in the eyes of the medical world, is always harrowing for the parents. Those who have written about this will almost always say it was their most traumatic time ever, and some continue to suffer post-traumatic stress.

Remember that this surgery almost always follows a period of your infant being sick and steadily losing condition, followed by what may be a deeply upsetting period of doctor visits, medical tests, specialist consultations, and typical hospital admission procedures – with baby’s condition steadily going downhill…

Remember also that doctors are human: far too many treat their fragile patients and parents poorly, and diagnosis is too often avoided or faulty, too often ending only at a near-terminal crisis. All this adds to the stress and strain.

Add to this that surgery for infant pyloric stenosis (“PS”) surgery is often promised to be a “quick fix”. Although many of these little patients do recover promptly and quickly more than catch up on their weight loss, other PS babies take months or even years to find their balance – and some few never do.

Add to this that many surgeons seem to regard their responsibilities as ending when they leave the operating room, and that many GPs simply don’t engage with parents who have a baby with a feeding problem.

When your baby had infant pyloric stenosis (“PS”), the surgery marked the end of a difficult time for you and your newborn treasure… Right?

If that’s true of you as parents or you as the baby, you belong to the truly blessed ones – at least in this respect!

Most doctors and websites tell the parents that there are no long-term problems after PS and its surgery (pyloromyotomy). Only a minority of the websites I have seen are a little more careful, assuring us that “most” babies will have no more problems. None go into detail about that “most”.

Readers of this post may well know what adhesions are, but just to be sure, let’s start at the very beginning…

What are adhesions?

Adhesions are bands and webs of tough, fibrous and inelastic scar tissue which develop after tissue damage resulting from injury, surgery, an internal infection, endometriosis, some chemotherapy, or radiation therapy. They can affect the functioning of muscles, joints, and ligaments, but cause most problems in the abdomen and chest where they can grow between our organs and the abdominal wall, or restrict the movement and work of our organs, causing pain and possibly restricting their function.

About 10% of all people develop adhesions naturally (without surgical or other damage), but it is estimated that they occur in over 90% of people who have abdominal or chest surgery – which means many of us! So we may be thankful that they cause significant problems for only a minority – but that’s small comfort if you belong to that minority.

These problems range from unsightly sunken scars and pain to life-threatening abdominal blockages. Adhesions cause 60 – 70% of small (upper) bowel obstructions in adults and can be the cause of chronic pelvic pain.

Some of us who have had infant surgery for infant pyloric stenosis, or for that matter any of a list of the diseases of the abdomen and chest may find that Continue reading “Scars that strangle”

People who have had a close experience of infant Pyloric Stenosis (whether their own or as a parent) are often bewildered and perhaps bemused by the medical mantra that “You’ll have a new child – there are no known long-term effects”.

We can be thankful that it seems that this well-meant but misleading assurance is usually (but far from always) valid, both in the short and long term. Because Pyloric Stenosis (“PS”) is rather common (2-5 in every 1,000 babies is a huge number world-wide) the widespread lack of awareness of and interest in the possible long-term effects of PS is probably a good indication that ongoing problems affect only a relatively small number – but again, worldwide this is a huge number. The web forum pages of Facebook, MedHelp, Patient, and Topix bear this out. So do the more than 100+ visits each day to my original Blog (started in 2010).

If only our experiences and the facts agreed with that mantra! This Blog is all about doing something about “What we wish we’d known” (its web address).

WordPress (which hosts my older blog) also gives me feedback, and it’s not surprising that the top number of searches there have been for information about the long-term effects of PS and the surgery for it. In this post I overview the material I posted about this to my original Blog. In the coming months I plan to post progressively to this Blog, which has an Index Page (see the banner at the top of this screen) to enable readers to overview and access its contents.

Most General Practitioners (GPs) will reject any link out of hand. Some GPs have even been known to ask their patient (or client) what “PS” (pyloric stenosis) is.

We can be sure that every medical textbook and training includes at least a page or part of a lecture on PS, which is the most common reason for non-elective surgery on infants in their first months and years. But who can blame a medical student for not remembering everything they are told and read over six or more packed years? Let alone what is currently known about a condition most GPs will encounter only rarely? Continue reading “Is there a link between infant Pyloric Stenosis and later abdominal trouble?”

Tinnin, Dr Louis – Infant Surgery without Anesthesia
The late Dr Louis Tinnin’s Clinic in the USA has provided information, support and therapy for people who carry PTSD after infant surgery. His Blog provides a helpful primer, a checklist, and interaction with survivors.